My Personal Journey With Cutaneous Lymphoma

With tremendous bravado I said sure, I’d write about caregiving for the Spring CLF newsletter. Sure, I’d love to, no problem. And I did want to, yet the truth is, it hurts. I actively fight down thoughts about caregiving because for Mom and I, that meant lesion care. I helped Mom mostly with her lesion care and also some doctor’s appointments. But up until the intensive lesion care, Mom and Dad shielded us “kids” from the lesions and tumors. With deep, great love, lesion care was endured together by Mom, me, my wonderful sister-in-law, and a few amazing nurses.

Lesion CareMom and I decided to call the cancer care, lesion care – as opposed to the generally used term, wound care. We decided to call this what it was in an effort to be honest and not slip into the safer harbor of denial. We believed the difference in term was important to the care routine as well as to other professionals’ understanding that this was the cancer, not a superficial secondary wound that would heal. This wasn’t a burn with dead skin to be debrided, nor a wound that needed to breathe. This was the cancer. This was It. We were all looking at It, the elephant in the room, and all I could see between lesions was my Mom’s beautiful freckled French Huguenot skin (as she’d tell us).

Lesion care between caregiver and patient is nothing less than intimate. It’s a shared experience. It’s painful for everyone involved, physically and emotionally. Yet, it’s also full of grace and love. Participating in lesion care with my Mom was loving her. It was living with her and sharing her illness and letting her know she wasn’t alone. It was a way that I could stay and control my pain in being useful. It was too painful for me to do nothing and feel helpless. Doing something and feeling helpful was – well, coping.

New RolesMom and I learned a lot about each other: it was unceasingly brave for her to be cared for and I tried to match her by being brave enough to be caregiving. After a lifetime of being a somewhat headstrong daughter, I was finding out that I desperately wanted to be made out of the same cloth as Mom. We laughed in our mutual astonishment and wonder: the apple didn’t fall far from the tree after all.

There were days when neither of us could face lesion care – but we had to do it anyway. There were days when Mom just didn’t want me to be her caregiver. She wanted me to just be her daughter. She wanted to be just my Mom. There was a tense dance of honoring Mom’s wishes yet sometimes having to do what was best for her even when those two things weren’t the same. These were little soulful deaths we suffered with tears, knowing the roles we now had, and didn’t want. But we were together… we were together.

Sacred TimeAnd then, there’s this: ultimately, caregiving was a sacred time. A time of pain, confusion, anger, exhaustion, and hopelessness. All this mixed together with the beautiful gifts of love, insight, truth, knowing, grace, and still more love. There was a constrictive sense of duty side by side with knowing there was no other place I’d be. My Mom and I talked about essentials all bared down: God, love, and our roles as mothers and daughters. My Mom, who was never at a loss for words, had difficulty describing the immense love and pride she felt about the family in which she grew up and the family she raised. She was astonished at how much she was loved by so many. She was seeing herself in a new light, in a new wide spectrum, and it was an absolute joy and privilege that she shared with me. Also, Mom talked about Dad. What a gift to a child of any age to hear one’s mother speak of her abiding love of one’s father – even after 52 years of togetherness!

GSH Lesion Care Program And so, I can close with kinder and gentler thoughts about caregiving and lesion care than I started with. It was hard and wonderful. Isn’t that life? What else would I expect? And in the end, my Mom encouraged me to create something for others: she gave me her blessing to start the GSH Lesion Care Program which the Cutaneous Lymphoma Foundation is wholeheartedly supporting, in honor of my Mom, Gabrielle Schwarz Haab – Gaby.

For more information about the GSH Lesion Care Program, contact the Cutaneous Lymphoma Foundation at (248) 644-9014 or .

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